FOI Response from Scottish Health Boards

To determine the level of understanding of PANS and PANDAS across the NHS in Scotland, we need to ask the question of each NHS Health Board individually.    This is because the structure of the NHS in Scotland gives individual Health Boards flexibility in how they deliver services and respond to local health needs, working within national policies, standards, and priorities set by Scottish Ministers.  NHS Scotland functions as a collective system, coordinating and overseeing boards rather than acting as a single centralised organisation.

One of the first things we did following our launch (and before our name change) was to send a freedom of information request to all Regional NHS Health Boards in Scotland. This asked 3 questions:

  • If information from the PPSG letter sent in May was shared with GP’s/Paediatrics
  • If they recognise that the PPSG statement supersedes the BPNA statement
  • What are the local pathways for patients presenting with symptoms of PANS or PANDAS

The responses are summarised in the table below, which also contains links to their full response.  Before reading it is important to put these responses in context.

  • To our knowledge there has been no engagement with Health Boards in Scotland from any organisation supporting PANS or PANDAS, and as such we at PANS+ Scotland are pleased to note the level of knowledge and understanding already out there across Scotland. 
  • The level of knowledge within each of the Health Boards is likely to have come from individual clinicians being engaged in trying to help their patients; parents, carers and patients sharing information; information from networking, conferences and the Royal Colleges of Medicine; and the letter from the PPSG. 
  • We also want to acknowledge and respect the statement from several Health Boards that they continue to hold weight in the BPNA statement, most notably around treatment options.  We encourage our community to see this in the light in which it is intended, in that they are not dismissing the condition – but have significant concerns about some of the treatment options suggested, and wish to proceed with caution until there is further research and guidance.

We hope as our work progresses to be able to support knowledge sharing on PANS and PANDAS between NHS Health Boards in Scotland.

The purpose of sharing this information is to allow families seeking support through their local NHS to understand what to expect, and potentially to share information with their GP to support referral to the appropriate team.

Health BoardInformation from PPSG letter circulated to GP practices/ PaediatricsRecognition that PPSG Statement supersedes BPNA StatementPathways for those presenting with SymptomsLink
Ayrshire & ArranNo record of letter being receivedN/A as no letter receivedWould discuss with Paediatrics colleagues in Glasgowhttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Ayrshire-and-Arran.pdf    
BordersCirculated to GPs by NHS Borders as part of the GP Weekly Update on 3 July 2025. The document was also passed to the Paediatric team.The NHS Borders Paediatric team recognises that the 2023 PANS PANDAS Steering Group Statement supersedes the 2021 BPNA Consensus Statement.These presentations follow the same pathway for any referral into Paediatrics.    See FOI response for full detailshttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Borders.pdf
Dumfries & GallowayNo record of letter being receivedThis information is a request for an opinion and is not information held by the Health BoardThis information is not held by the Health Boardhttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-DG.pdf
FifeNHS Fife does not hold information in relation to General Practice. Information was circulated to Paediatric clinicians at the timeNHS Fife recognise that the 2023 PANS PANDAS Steering Group Statement supersedes the 2021 BPNA Consensus Statement.Clinicians will consult in a multiprofessional/multi-departmental manner including discussion amongst local Acute and Community Paediatrics and the Child and Adolescent Mental Health Services. Advice may also be sought from the tertiary paediatric centres.https://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Fife.pdf
Forth ValleyNo record of letter being receivedYesPatients with suspected PANS or PANDAS would be discussed with or referred to tertiary specialities within NHS Greater Glasgow & Clydehttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Forth-Valley.pdf
GrampianCirculated to CAMHS, Community Child Health and Aberdeen Children’s Hospital Nov 2025The CAMHS Leadership Team are in discussions around how the information from the PPSG will be incorporated into an ongoing review of all pathways for Neurodevelopmental/ Neuropsychiatric conditionsThe CAMHS Leadership Team are in discussions around how the information from the PPSG will be incorporated into an ongoing review of all pathways for Neurodevelopmental/ Neuropsychiatric Conditions   See FOI response for full detailshttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Grampian.pdf
Greater Glasgow & ClydeAwaiting response
HighlandAwaiting response
LanarkshireNo record of letter being receivedValidity and merits of both documents are recognised.These presentations follow the same pathway for any referral into Paediatrics.    See FOI response for full detailshttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Lanarkshire.pdf
LothianGeneral paediatric, paediatric neurology and CAMHS teams are aware of the guidance. Primary Care have not circulated any separate information to GPs.Clinicians in general paediatric, paediatric neurology and CAMHS teams feel that both statements provide valid and useful guidance to clinicians.Where there is concern about an acute neuropsychiatric disorder then a multidisciplinary discussion between clinical teams (paediatrics, CAMHS, neurology) takes place to determine the best diagnostic and treatment approach, guided by the national guidance in the consensus statements referenced in the FOI request.   See FOI response for full detailshttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Lothian.pdf
OrkneyNo written evidence of the letter being receivedNHS Orkney holds no recorded evidence to confirm that it recognises the 2023 PANS PANDAS Steering Group StatementPatients from NHS Orkney are referred to specialist services in NHS Grampian for diagnosis and treatment.https://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Orkney.pdf
ShetlandRequest delayed due to change of FOI process
TaysideLetter referenced is not recorded as being received.The BPNA revised consensus statement remains valid in relation to the use of immune/ aggressive medical therapies until such time as there is a robust, safe and effective evidence base to support this or other treatments   See FOI response for full detailsAll children referred to the NHS Tayside paediatric neurology team with possible PANS PANDAS are investigated appropriately including a full medical evaluation and exclusion of other known medical conditions.   See FOI response for full detailshttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Tayside.pdf
Western IslesThe information was passed to GP Practice Managers for distribution to GPs. NHS Western Isles does not have a dedicated Paediatric Unit, however, it was circulated to our two locum Paediatric consultants.YesEarly involvement of the local CAMHS team and the NHS Greater Glasgow & Clyde neurology team would be initiated promptly.   See FOI response for full detailshttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-Western-Isles.pdf
National Services ScotlandNot applicableNot applicablehttps://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS-NSS.pdf
NHS 24YesOn reviewing our NHS inform platform we note that there is no specific information on PANS/PANDAS, and therefore we plan to review this at our next Clinical Change Governance Group meeting in December 2025.https://pansplus.scot/wp-content/uploads/2025/12/FOI-Response-NHS24.pdf

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